My Lyme Disease Symptoms Were Misdiagnosed

November 2, 2016. It was a beautiful fall day in New England: The perfect opportunity to take my five-year-old son and his friend on a nature walk in the woods surrounding our yard in Massachusetts. 

The walk was short-lived. My son's friend stumbled over a tree root, prompting us to return to our home. But our time outside was long enough to pose an unexpected risk.

The following evening, my husband found a tick attached to my back. He removed the creature as carefully as possible and applied antibiotic ointment. 

What I knew then about Lyme disease told me that I would develop a bulls-eye rash or flu-like symptoms if the tick had transmitted the illness to me. Neither of those signs appeared, so I assumed I was OK. 

That flawed assumption drastically changed my life.

A Sudden Appearance of Symptoms

In the months following the incident, I started noticing frightening changes in my health. One day, during a work meeting (I'm a kitchen and bath designer), I was suddenly overcome by shortness of breath and crushing chest pain—two Lyme disease symptoms, per the National Library of Medicine.

I visited my primary care physician (PCP). After a normal EKG and chest X-ray, my PCP diagnosed me with heartburn and wrote me a prescription for heartburn medication. But I endured heartburn during my two pregnancies, and it felt nothing like this. 

The drugs provided no relief, yet all my bloodwork returned normal, so my PCP deemed it a virus that would soon pass. It did not.

A few days later, remembering the tick from that past November, my mother recommended I ask for a Lyme disease test. My blood was drawn, and two days later, it returned negative. I had no reason to doubt my PCP or the test results. With Lyme disease ruled out, I moved on to determine what was happening to my body.

The Search for a Diagnosis

The next few months brought an onslaught of additional symptoms and medical appointments with various healthcare providers. 

First, a rheumatologist told me that my chest pain was costochondritis (inflammation of the cartilage of the rib cage). Then, a spine specialist performed X-rays and MRIs of my spine, as my neck had become increasingly stiff with minimal mobility and nonstop cracking and popping. 

Later, a neurologist concluded that I had carpal tunnel syndrome, explaining the onset of increasing numbness and tingling in my hands. But why was I having those issues when I hadn't made any repetitive wrist motions known to cause carpal tunnel inflammation? 

Because I continued to struggle with shortness of breath, a pulmonologist assessed my lungs. Those tests came back normal. Once again, the healthcare provider told me that I most likely was experiencing costochondritis due to my breathing issues. 

I desperately wanted all of those pains to go away. Yet, the diagnoses seemed almost like guesses, and the symptoms were not fading.

Managing all of those random symptoms was incredibly frustrating. Each visit with my PCP about a new symptom got me nowhere. 

At one point, my PCP told me I should try meditation, shocking me. I had been her patient for over a decade. I was perfectly healthy the entire time, save for a bout of mastitis while breastfeeding. Now I had all those symptoms, and she suggested they were psychosomatic. 

I was beginning to feel hopeless. How could I have gone from being 100% healthy to having all those issues?

By the time May 2017 rolled around, I was navigating all of the existing symptoms and dealing with a new one: Temporomandibular joint dysfunction, better known as TMJ. My jaw throbbed nonstop. And after an extensive initial intake by a highly regarded physical therapist, his feedback was startling. The stiffness of my neck, coupled with my lack of strength and overall pain level, led him to say: "In all my years of experience, for me to see someone in your condition, you were either in a head-on collision or bitten by a tick."

I explained that I had been bitten by a tick. But when I ensured my tests were negative, the physical therapist encouraged me to ask for additional testing.

The Potential for Lyme Disease

As soon as I left his office, I began researching Lyme disease tests, specifically their accuracy—or lack thereof. Moreover, I read many articles stating that a Lyme diagnosis should be clinical, not based solely on a blood test.

I returned to my PCP, requesting to see her in-office infectious disease specialist. My husband came with me to the appointment, desperate to find an answer. When the specialist entered the room, I explained that I had been very unwell and believed it was related to a tick bite. 

He looked me up and down and replied, "You don't look unwell." 

My husband and I were both shocked but pushed for another Lyme disease test. Once again, it was negative.

In June of that year, six months after the start of my symptoms, things went from bad to worse. The entire right side of my face went numb. If I touched the skin, it felt strange. It felt like I had gotten a Novocaine injection. 

I also began having random episodes of leg numbness, causing me to stumble. That happened while shopping at Target with both of my sons one day. I sat down in the middle of the aisle until I could stand, then clung to the shopping cart so that I could get the kids to the checkout and back to the car. 

That experience was a turning point for me. An accurate and meaningful diagnosis was now imperative.

Getting the Right Diagnosis

My mother insisted that I see the chief of infectious diseases at a prominent hospital in Boston. So, on July 13, 2017, roughly seven months after this all started, we met with him, and he agreed that something unexpected was wrong. 

He felt it could be the onset of multiple sclerosis (MS) or another autoimmune disease. He said he wanted to draw blood and run as many tests as possible for different infections, autoimmune markers, and signs of inflammation. He also said he would run another Lyme disease test, called a Lyme C6 Peptide. His experience dictated that the test was more reliable than I'd already had.

One week later, he called with the results: Everything was negative or normal, except the Lyme disease test, which was positive. I was thrilled at first, as he said a three-week course of the antibiotic doxycycline would cure me. He called in the prescription, and I started it the next day.

I had no idea what to expect from treatment. I soon learned that tick-borne infections cause your symptoms to become much worse during treatment. When you take antibiotics, an enormous number of infectious organisms die off, which causes an inflammatory response in your body.

So, at the end of the course of antibiotics, my pain was much worse than it had been. My facial numbness had turned into full-blown trigeminal neuralgia (chronic, searing pain due to inflammation of a cranial nerve). I couldn't chew food or speak comfortably because my facial and dental nerves were inflamed. Then, all of my body pain worsened.

Can Lyme Disease Become Chronic?

After completing the course of antibiotics, I returned to the infectious disease specialist in Boston and reported my state to him. He offered me painkillers and said I was cured, all additional pain arising from damage done by the infection. With time, the pain might improve. 

I was shocked. There was no way I could live in that condition. I was sicker than before and now in a desperate state. Still, he insisted there was nothing else he could do for me.

With further reading and research, I learned about a considerable controversy surrounding Lyme disease and whether it exists in a chronic state. 

Per the Centers for Disease Control and Prevention (CDC), short-term antibiotic therapy is sufficient for treating Lyme disease, regardless of the time a person goes untreated. Alternatively, the International Lyme and Associated Diseases Society (ILADS) recognizes long-term treatment of tick-borne diseases. According to the ILADS, persistent symptoms after a short course of antibiotics are not signs of permanent damage but ongoing infection.

Effective Treatment for Lyme Disease

The trigeminal neuralgia made eating impossible, and I soon lost 20 pounds off my thin frame. This was so confusing that I wasn't sure what to do or who could help me. My children and family were growing increasingly alarmed as I could no longer hide the extent of my illness.

I found a local healthcare provider who knew much about Lyme disease and insisted we do further testing. 

I sent my blood to the Igenex lab in California and Armin Labs in Germany, both highly regarded for their accuracy in Lyme disease testing. All of my results were positive for Lyme disease. 

Then, in October of that year, my mother's hairdresser connected us with one of her clients who had told of a similar experience. She recalled seeing a healthcare provider specializing in Lyme disease. She was in remission and symptom-free after long-term correctly targeted antibiotic therapy.

The following month, we met with that physician, Jeanne Hubbuch, MD. Dr. Hubbuch went through all of my test results with me for an hour and a half, then looked at me and said, "You're fixable." Dr. Hubbuch also explained that the treatment process takes time, often years, and focuses on killing off the infectious organisms while supporting the body's path to healing.

Dr. Hubbuch immediately started me on daily injections of antibiotics and oral antibiotics. Once again, each antimicrobial's introduction worsened symptoms but slowly faded. 

After 18 months into treatment, I made significant gains. My trigeminal neuralgia was utterly gone, as were some other symptoms.

Recognizing the Symptoms of Lyme Disease

Ticks are countless different bacteria, viruses, and fungi. Getting a bulls-eye rash is like winning the lottery. Many people do not develop it; worse, some do not notice the tick bite. That makes diagnosis even more complicated. 

Dr. Hubbuch recommended removing and sending an attached tick for tick testing to determine what pathogens it carries. That way, you know what to treat should symptoms appear.

I had no idea that Lyme disease symptoms could be so varied and diverse. For this reason, Lyme is known as the "great imitator," mimicking symptoms of diseases such as fibromyalgia, MS, and lupus, to name a few.

If you or someone you know has seemingly unrelated symptoms affecting a wide range of bodily processes, ask your healthcare provider for a Lyme disease test. In addition to a bulls-eye rash, according to the CDC, common symptoms of Lyme disease include:

• Fever and chills
• Headache
• Fatigue
• Muscle and joint pain
• Swollen lymph nodes

However, remember that a negative test does not mean you do not have Lyme disease. 

"This is when you need to see someone very well trained in differentiating what could be tick-borne illness from the myriad other things that can cause similar symptoms," explained Dr. Hubbuch.

Moving Forward and Preventing Lyme Disease

Lyme disease is often considered to be an invisible illness. Still, to myself and those close to me, the condition is heartbreakingly tangible. Untreated Lyme disease has stolen two and a half years from me. My goal is to reach remission and live a symptom-free life. 

I find comfort in taking the proper precautions to protect myself and my family. I'll still roll in the grass with my kids and go for nature walks. But beforehand, we'll apply bug spray. And afterward, we'll do head-to-toe tick checks. 

With tick-borne disease, prevention truly is the cure.